Mary Chapman, features writer —

With a new version of a low-cost eye-tracking system called EyeWriter, artists and others who are paralyzed due to amyotrophic lateral sclerosis (ALS) can more accurately draw and create images using only their eyes. The latest EyeWriter 2.0 software improves the system’s accuracy and now also allows the…

Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 on Feb. 28. The activities are focused on heightening awareness about rare diseases and the hundreds of millions of individuals they are thought to affect. Patients, caregivers, and advocates worldwide will sport denim ribbons…

While progress was made last year on newborn screening and other policy issues critical to rare disease patients, a “State Report Card” argues that many concerns — notably out-of-pocket costs for prescription medicines and access to affordable comprehensive care — still need attention. Those were the findings of the…

As a new U.S. Congress prepares to start the annual process of determining funding for federal programs, the ALS Association is asking its advocacy network to press their legislators to expand support for research in amyotrophic lateral sclerosis (ALS). “This year, the ALS Association will aggressively pursue new and…

Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization for Rare Disorders (NORD)’s Rare Caregiver Respite Program may be a helpful resource. The program seeks to give a…

Indiana motorists can now sport a specialty license plate on their vehicles to show their support for amyotrophic lateral sclerosis (ALS), while contributing to the work into this neurodegenerative disease underway at the ALS Therapy Development Institute (ALS TDI). Proceeds from plate purchases will go to support studies taking place at…

To mark what would have been the 79th birthday of the theoretical physicist Stephen Hawking, who lived with amyotrophic lateral sclerosis (ALS) for 55 years, Answer ALS is providing researchers with free access to the world’s largest ALS data portal. To help spread the word, the organization…

The National Organization for Rare Disorders (NORD) is seeking individuals willing to share real-life experiences with rare diseases to speak at its upcoming virtual Living Rare, Living Stronger NORD Patient and Family Forum. The interactive, patient-focused forum will be held online June 26-27. The deadline to apply for…

After years of behind-the-scenes work, the ALS Association is celebrating passage of the ALS Disability Insurance Access Act of 2019, likely to end the nearly half-year wait amyotrophic lateral sclerosis (ALS) patients go through to receive Social Security Disability Insurance (SSDI) benefits. The U.S. Senate earlier this…

Target ALS is launching an expansive $15 million research initiative aimed at discovering biomarkers and developing new scientific resources for amyotrophic lateral sclerosis (ALS). The Target ALS Diagnosis Initiative, touted as the first of its kind, will create grants and scientific resources to identify needed biomarkers. Such indicators allow…